After an overwhelmingly large boycott from Autistic advocates, academics and many others on and offline, Spectrum 10K (a project aiming to collect the DNA and medical history of 10,000 Autistic people) was paused for ethical review. Ethical approval was re-granted with the caveat that consultation be conducted throughout the remainder of the project (read more on the pause here).
Independent consultant company, Hopkins Van Mil (HVM) alongside Autistic researcher Karen Leneh Buckle conducted a three-stage consultation process ending in an online survey launched in March 2023. Five webinars discussing the different areas of the study were created to support respondents, these areas included: The aims of the study, ethics and values, inclusion of those who can’t consent, data collection and management. The fifth webinar simply encompassed “other topics about improving or changing the Spectrum 10K project.” Unfortunately, the transcripts for all of these sessions were released after the survey closed in May, making them inaccessible to many.
In June, the project’s website announced it would publish results in late 2023, however in January 2024, Hopkins Van Mil published a statement from Spectrum 10K saying that the full report would be available “in due course.” Karen Leneh Buckle declined to comment.
In a statement addressing the website status and overall progress of the study, a University of Cambridge spokesperson said: “Spectrum 10K’s full website is temporarily unavailable due to technical issues affecting the University of Cambridge’s School of Clinical Medicine.“ This progress of the project was left unanswered.
Delays to the study, including the website being unavailable to visitors for several months in 2024, have resulted in a no-cost extension by the project’s funders: The Wellcome Trust. This shall extend the project from January 2024 to January 2026.
The consultation summary, including all three stages of the consultation, can now be found on the archived Spectrum 10K website here. I shall take some time to read these over before writing another blog on the potential outcomes of the consultation. Feel free to add your thoughts in the comments below in the meantime.